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In this Issue

May 2008
CFIDSLink Electronic Newsletter 

CFIDSLink is e-mailed monthly free of charge to all those interested. To sign up for the electronic newsletter visit http://www.cfids.org/subscribe.asp

In this Issue

  • From the Desk of Kim McCleary
  • Research Matters
        An Interesting Hypothesis
        Research Roundup
        Fostering Research: An Inside Perspective
        Join us for a Free Webinar on CFS Science   
  • CFS on Capitol Hill
        Congressional Briefing on CFS This Week
        Virtual Lobby Action Is Under Way (Join In!)
  • Alternative (to) Exercise
  • Tell Us Your Story
  • Personal Stories: Kay Puckett Honors a Friend Lost

From the Desk of Kim McCleary
On Capitol Hill
Association president & CEO Kim McCleary is on Capitol Hill this week for a flurry of activities, including a congressional briefing on CFS. Here’s her take on how the week is progressing.
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Research Matters

An Interesting Hypothesis
In the April 2008 issue of the journal Medical Hypotheses, a respected scientist from Norway shares an intriguing hypothesis about CFS being caused by a rare brain infection from a common, normally benign virus. Could this be a promising path to investigate as the cause of CFS? Association scientific director Suzanne Vernon, PhD, explains the premise and provides some context.
Get the full story >>

Research Roundup
Here’s a quick look of three fascinating studies that have been released in recent months. Published in peer-reviewed publications ranging from the Journal of Neuroscience to the journal Dynamic Medicine, these studies cover topics from chronic pain to the economic impact of the illness.
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Fostering Research: An Inside Perspective
The CFIDS Association has been funding interesting studies and fostering the CFS research field for more than 20 years. Get an inside perspective on the strategy behind our program as CFS research has evolved.
Get the full story (in PDF format) >>

Join us for a Free Webinar on CFS Science
The Association’s scientific director, Dr. Suzanne Vernon, and president and CEO Kim McCleary will be online “live” for a webinar on May 28 at 2:00 p.m. (EDT). Tune in and learn about “The Science of CFS: Past Present and Future.” All you need is an Internet connection and a phone.
Get the full story >>

CFS on Capitol Hill

Congressional Briefing on CFS This Week
On May 8, the CFIDS Association and Senator Tom Harkin (D-IA) will host a congressional briefing on CFS. Speakers will include NPR’s Scott Simon and recognized CFS experts.
Get the full story >> 

Virtual Lobbying Action Is Under Way (Join In!)
Join thousands of advocates taking action to build a stronger federal response to CFS through the CFIDS Association of America's 5th annual Virtual Lobby Day. In 30 minutes or less, you can write to your U.S. senators, the secretary of health, your representative in the House of Representatives, CDC Director Dr. Julie Gerberding and NIH Director Dr. Elias Zerhouni. Last year more than 6,000 messages were sent by Virtual Lobby Day participants. Working together, we can greatly exceed that count and demonstrate even more support to legislators, policymakers and the media for increased attention to CFS. Five easy-to-complete activities are now available at http://capwiz.com/cfids/home/.

Alternative (to) Exercise
How do you balance the health risks of overexertion with the risks of deconditioning? Here’s how one woman with CFS is using nontraditional exercise practices to meet the challenge.
Get the full story (in PDF format) >> 

Tell Us Your Story
We’d like to hear from patients and family members about their experiences dealing with CFS. We’re looking for individuals in the following four categories: 1) teens or adolescents with CFS, 2) African Americans or Hispanics with CFS, 3) CFS patients who are using graded exercise or pacing as part of their treatment regimen, and 4) family members of patients. If you fall into one of those categories, and you’re willing to tell your story, please contact media@cfids.org and tell us a little about your experience so we can follow up with you personally. Your story can help educate Americans and the medical community about this illness, so we hope you’ll share it!

Personal Stories: Kay Puckett Honors a Friend Lost
Kay Puckett has lived with CFS since 1994. She offers support and assistance to others struggling with the illness. In this story, she honors a friendship she shared with a gentle woman who ultimately found the struggle too much to bear.
Get the full story >>